We do know that the Intergel study's are underway, we do know that there are DR's out there who ARE working to improve their adhesiolysis techniques, we do know that there is at the very least, recognition of our disease! And to have adhesions finally recognized as the dominant cause of our pain is a massive advancement in our disease...recognition! You wouldn't be having surgery if a surgeon didn't recognize and respect that you are in fact suffering real pain and symptoms...all associated with adhesions! Now THAT alone is a breakthrough!
All that has come about just within this last year, and in a great part to the IAS bringing it into the focus of the medical society as well as those suffering with it!
If you or anyone elect to have a surgery, then have it. It will offer you some time to live, as even without ARD, no one knows how long they have to walk this great earth, so why NOT try it and give yourself the chance to live as near a normal life as you can. And just what if it does work for you and you are rendered pain free? All that could happen .....life is taking chances, and for us, surgery is taking a chance.
Now, that is all the positives of looking at an adhesiolysis.......but here is the reality of having an elective adhesiolysis......
I think that part of taking that chance though, is to have your T's crossed and I's doted before you go into it. It is one thing to have that surgery and have short term relief, but what happens when you are so full of adhesions from surgery's that you cannot have more surgery's ( and yes, that happens all the time ) and are suffering pain so bad that you cannot only play with your child, have relations with your husband, but NO recourses either?
As long as you have discuss all aspects of what will happen to you and your body following another surgery, including what happens if you present with pain again shortly down the road following the surgery, or what happens if your adhesion become so dense and you cannot have any more adhesiolysis surgery's due to the adhesion build up from to many surgery's. Maybe you should think about discussing all this with your primary DR. as to just what steps he will take when you can no longer have adhesiolysis surgery's due to massive dense adhesions and your presenting to him with massive pain! Think about those things as this is part of living with ARD...
If you have exhausted all pain medications as a way to relieve your symptoms and you can accept what a surgery in all probability will bring to your body in your future, then have your surgery. I wonder if you are really getting effective medications as I lived with this for 14 years and it wasn't until the last 4 years that I was actually able to handle the pain and get through my days with the help of medications.
Cyn, you really have to think about these things as it will be up to you as to how your future will be....you already have ARD....think about this...do you have time to learn about it and try to take control of it without a surgery? Or will it be another surgery that in all probability will only make you worse? Are you willing to take that chance....you've had surgery's before, that is how you got the way you are now...what do you REALLY think another surgery will do to an adhesion former? What would YOU advise me to do as an adhesion former?
Having another surgery will buy you time, I did it in April of this year....I made my choice...but I checked out the surgeon, I asked how many laporoscopic adhesiolysis surgery's he has done, I requested his adhesiolysis procedure to see what made his different then my prior adhesiolysis surgery's as I wanted the best chance a surgery could offer me as to non reforming adhesion following the surgery. It took me four months of study, contacting references and understanding adhesion formation before I elected to go with it. I also met with my PCP as to what we will do in the event the adhesions do reform. I wanted to make sure that we all knew exactly where we stood if I presented with undiagnosable pain again!! Respect and recognition as to my disease! You can find my story in the June forum of the IAS....and mine was no ordinary adhesiolysis....if it succeeds it may just open the door for many who suffer this disabling disease.
I am not against someone suffering with ARD to have an adhesiolysis, not at all, but I am against them going into it blind...no excuse for that at all now days. So cover you tail, ask questions that relate to YOUR future treatment sin the event this doesn't work...that is all it takes. To many of those who suffer with ARD have had so many adhesiolysis surgery's that they are now being told that they are all but hopeless in getting effective treatment, ..and they live in their pain...wondering if that pain would be less right now if the had NOT had that adhesiolysis surgery that offered them that same short term pain relief....I wonder that all the time..and if this one doesn't work...I know what I am in for..but I sure hope by that time, help for us has been found!
Good luck to you, be sure, be safe and even in the midst of your pain and suffering...be smart!
God speed be with you! Beverly
>----- Original Message -----
From: Cyn <ALady4All@aol.com>
To: Multiple recipients of list ADHESIONS <adhesions@talk.obgyn.net>
Sent: Sunday, November 28, 1999 10:16 AM
Subject: Barium enama and adhesion
> Hi,
> I am having a Barium Enema tomorrow and doing all the prep things today.
> I know what they are looking for and I am almost sure they will find a
> blockage of some sort. I go back to the GI(he is the one that order the
> Barium) Tuesday and then to see the Surgeon on Thursday. I know and my
> GI knows that I have adhesion that are causing problems with my
> Intestines, constipation and dia. I am hoping that the surgeon will
> order the surgery for the following week and that it is NOT just day
> surgery. My last surgery was Aug. and it was almost 5 hours long due
> to all of the adhesion. It took the Dr almost an hour just to get to my
> left ovary. I read the report and on the report it says, Massive
> adhesions everywhere. I know that more surgery can and probably will
> cause my adhesion, but I can not continue in the pain I am in. My
> husband and I have not been able to make love in over 3 months due to
> pain, I can not love on my 3 year old like I use to be able to because
> of the pain. Since November of 98 I have had 3 surgeries.
> Nov. Ovarian suspention/uterus ablation/endo
>
> Mar. Vaginal Hyst with right ovary removed(suspention did not work)
>
> Aug. Recto./cysto/left ovary removed/hernia/excesse
> tissue/adhesions(covered)...this surgery was done by a large incision.
>
> So now I am looking at more surgery to "fix" all of the others. But I
> really need it because I can not continue this way. I am like alot of
> you, thoughts of "ending it", running away, why bother...I have been
> through all of them. But I can't let them get me down anymore. So
> please feel free to Email me to let me know what I am going through is
> not all in my mind, sometimes I feel like I am losing it. Thank you in
> advance for your help. Cyn
>